Sleepless nights -Muscle Twitches, fatigue and overnight pulse ox question

[Nevergiveup13]

Hi everyone, sorry for the long post but I found this group and am praying for some advice from anyone that maybe has gone through something similar or knows any information.

I am a 54-year-old female who has always been very active. I am not overweight and was in really good shape (used to go to Orangetheory last fall). I am overall pretty healthy; have always exercised at least 3 to 5 times per week. Last fall I noticed that I was having significantly decreased energy and especially when exercising so cut back on it. I have always been a super light sleeper and did not sleep much. I noticed that some days I felt better than others but overall I was often very tired. I worked quite a bit daily sometimes until 10 o’clock at night so contributed it to working too much.

Fast forward to February 2020 and in the middle of the night after falling asleep for a couple of hours, I woke up and saw white and thought I was going to die, had heart palpitations, shaky, cold, heart racing. I have had this happen off and on the last 15 years since sinus surgery. I went to the emergency room and they couldn’t find anything wrong with me (did blood work, head CT with and without contrast and chest X-ray). They said it was vertigo although I have experienced vertigo and it was nothing like that. My doctor saw me later and referred me to an ENT. He said vertigo too but I still don’t think he was correct.

I kept working and a couple of weeks later one evening my heart was racing after lying down to rest and I stood up not thinking anything of it and got dizzy, passed out and then came too and vomited-ugh. By this time at work, my exhaustion level was through the roof and I felt like I was always in a fog. My doctor pulled me out of work and it was right before Covid started.
I was having the night sweats, SOB, racing heart, dizziness when getting out of bed in middle of the night, heart palpitations, feeling of exhaustion, pain all over my body and generalized weakness. I went through a ton of tests it seems.

Every morning it takes me about two hours to get out of bed. It takes me until about 1:00 to get going. Some days I feel better but definitely not myself. After I stopped working, I also noticed that my body was burning. It seemed as if before I was living off of adrenaline to try to get through each day when working. The burning has gotten better since I stopped working but that took time for it to improve and I have noticed if I push myself too much that it comes back. My doctor did a bunch of blood work from rheumatoid tests to mono (which I had approximately seven years ago and it is exactly what it felt like almost),lymes, liver function, etc. and found nothing but a ferritin level mildly elevated.

She referred me to a hematologist/oncologist and he mentioned some reasons it could’ve been elevated and also mentioned that I could have sleep apnea but that he wanted to repeat the ferritin level again before doing an overnight study. When it was repeated it came down to some but not to normal and said he didn’t think it was sleep apnea and didn’t do the test. I was told that I was really healthy by him.

My doctor referred me to a cardiologist and I got a second opinion from another cardiologist. I had a stress test, holter monitor, echocardiogram and EKG and said that everything checked out fine. I also had a CT calcium score test done just because my cholesterol although my my good cholesterol is really good. That was a zero which apparently is a good score. One of the cardiologists said that I had deconditioning and said to try to work back up to getting into better shape.

She also referred me to a pulmonologist. He ordered an overnight pulse ox study back in April. Because of Covid I wasn’t able to get back in with him until the end of July and at that time he told me my overnight pulse ox study showed that I had 24 minutes when my O2 sats were under 88%. I would have thought he could have
Told me back in April. I figured he would if wasn’t good. By this time I have lost my job because I can’t function daily. That day I also went through some breathing function tests which all came back normal. He says he wants to refer me for a sleep study however where I live there are no openings for an overnight sleep study until November! I don’t even have one scheduled. I have decided to leave my area and I’m trying to make an appointment somewhere else.

Currently, I have still exhibited deconditioning am unable to exercise like I used to and try to move at least every day which I don’t know if that’s good or not. I have developed muscle twitches throughout my legs, a feeling of decreased sensation on the tip of my forefingers and thumbs and some days my balance just doesn’t seem right especially if I try to do too much. I need to take breaks. My doctor prescribed me diazepam back in April and I was using 2.5 mg to sleep because I would always wake up (again always have been a terrible sleeper). After taking it the next day, I am really dragging even more and now since not taking that don’t sleep much at all. The last two nights have been really rough and have had episodes like I did back in February. I started checking my Oxygen with a finger pulse ox and have ordered a wrist pulse ox that vibrates to alert me if my oxygen goes down. When using the finger pulse ox, I notice that shortly after I lay down, my oxygen decreases to under 95 and then goes down more as I relax. My resting heart rate is pretty low usually-46-56 (though the cardiologists think that’s fine). Last night I had the finger pulse ox on and when I woke up looked at it it is it was 88. The other time the battery had burned out. I noticed that when I wake up during these terrible episodes my pulse is low and then it shoots up and then it stays up for a while and then it takes me about an hour to an hour and a half to feel better. I get chills cold hands cold feet just overall feeling really crappy.

I also have a history of allergies and sinusitis and had sinus surgery back in 2004. The only medications I use are Nasacort and azelastine nasal sprays. I have developed anxiety with all of this but don’t take the diazepam because I read that that is not good for people that have sleep apnea and do not like taking any medications anyways. I also have a history of TMJ since my early 20s and use a mouth guard.

I am writing this because of my frustration and now am scared to sleep. I also am worried that my sleep test won’t be for a while longer and don’t know what to do until that time. Is my pulse ox overnight study that bad? My pulmonologist does want me to come in to see him on Monday since I’ve been having these episodes more. Can anyone give me any advice or suggestions what to do in the mean time or what I can ask my pulmonologist to do on Monday? I feel like the walking dead and am so frustrated and saddened by my quality of life and losing my job. Any words of wisdom or support would be so helpful. Thanks!

[Julie]

Hi, what a story! I had mono at 25 and thought I was late for it, but you have me beat by a mile! If you do have apnea, it's likely related to menopause as that can often set it off or make it show up even if you've had it for a long time.

Ask the pulm. MD for a home study (done all the time).

And people here can help a lot with getting you set up if equipment and advice become necessary - long time experienced experts who can make a difference to how things go depending on your study - and remember the study results are yours by law if they take their time or give you a hard one (but only a doctor can give you the results, the tech people, if you do end up at a sleep lab, cannot.

So keep pushing for attention and remember that it's now thought that if anything, apnea may cause wt. gain, rather than the other way around.

Do you also find you have to urinate overnight (more than you otherwise used to), and/or get up with a headache, sweat overnight, or anything else? Have you had your thyroid checked properly in recent times?

Good luck!

[1102TC]

I have a similar story to yours. When they can't find anything wrong they label it as panic attacks and anxiety and give you a benzo for help. I was a workaholic and now I am not functional and on disability. My SPO2 reacts the same way. Relaxed it can drop to the upper 80's and full blown panic attack that I admit I do now actually suffer from will hit 99. I recently self discovered that I suffer from central apnea events. I just made a post titled "common sense" and how I came to this conclusion. I am new so it may take time until the administrators post it. Something has gone wrong and my brain does not tell my body to breath in my sleep so I wake up in a living H311. I have an appointment in a few days. Just a heads up as I believe that benzo's can make apneas worse. I have lots of tests done in the past already and it looks like I will gets lots more. I also have an exercise intolerance, a hole in my heart I was told "not to worry" about but it's time to re-examine these things. Not only does a hole in the heart mix blood it also increase stoke risk as blood clots can travel to the brain. This all started for me 4 years ago when I collapsed on my daily workout. I am jealous of your resting heart rate. I have turned into mush. Take care, sorry I have no real answer.

[Nevergiveup13]

Hi Julie,
Thank you so much for the response. Your point with menopause is a really good one. I am going to think about that more. I have had a holter monitor before (at least 2 other times) since after my sinus surgery because I had told my doctor about the heart palpitations in the middle of the night with wakening several times. If always came back normal so I just let it go and have lived with it. I also have had night sweats for years that probably also started after my sinus surgery. I have been done with menopause since my mid 40s and still need to sleep in a freezing cold room.

I have asked the pulmonologist about an overnight sleep study and I have been told that he does not know of one-just the pulse ox. Maybe certain areas are able to do them? My husband thought given Covid that maybe our insurance would provide 02 or CPAP machine before the study but I guess the Dr really doesn’t know what I need yet. I am learning still.

Interesting point about the weight gain because I feel like I am more bloated when have some nights that are worse than others and swollen fingers and feel like my face too. I have had some mornings recently I wake up with a headache, in fact had one all day a couple of days ago when had big episode.

They checked multiple thyroid levels back in March and all normal. It was interesting because the nurse completing my pulmonary dx test noticed lines on my fingers and pointed it out to me. I have also recently noticed a divot/depression mark on both of my thumbs. When I asked my dr to recheck thyroid she said she had but would do again. I have also made an appointment with a integrative medicine doctor/internal medicine doctor outside of my area too hoping someone will run more bloodwork or help me get a sleep study quicker.

I do go through periods when I wake up to urinate a couple of times a night. Lately, I haven’t wanted to move so hold it. I never go through a night without waking up 2-4 times. Last night it was every hour and a half and I think that is because I don’t want to go into a deeper sleep because I am afraid that I will have another episode. I am living off of basically very little sleep and thinking that is why I am also feeling like I am feeling.

Do you know if people’s severe side effects come and go depending on how deep of a sleep they go into. As I mentioned in my first post, I think I have been living off of adrenaline and stress from working and couldn’t keep up anymore.

I am trying to push now more. I am even thinking I should go to the ER of the sleep center place I am going to and maybe that would help me get in quicker. Does that sound crazy or what? . Thanks again for your help.

[Julie]

Didn't know sleep places (?) had ERs... but I don't think you're crazy, whatever is going on, though I do wish you had more options MD-wise. The sweats and needing to pee would go away if you were diagnosed and using a Cpap though.

It's always an 'overnight' study wherever it's done, but you want one to do at home. Maybe try de-emphasizing the 02 business for the moment but ask your insurance co. if they can fund the study at home and where to go to get it done (or be referred there). Being in Canada it's a bit harder to be sure how your system works and maybe others will have better ideas re accessing things because it sounds like you need something done, whatever it ends up being. I hope your MDs aren't writing you off as a postmenopausal female neurotic - not in 2020!

There's a place called Secondwindcpap.com that lets you buy machines, masks, etc. cheaper than new (can't remember if they need a prescription or not tho' others here will say) and if you can afford that, we will advise what to get (it matters) and then explain how to use the stuff to test yourself, including free software we'll point you to that you can download, post results here and get advice on. If interested in this route (lots have used it) say so and we can get you started.

[Nevergiveup13]

Oh my gosh! That is a great idea and would be wonderful. I have blue cross blue shield so if someone knows which at home sleep companies would send me the study items, I could do that.

It’s not an ER sleep center but since I am not affiliated with the hospital system was thinking if they thought it was more urgent would get me in the sleep center quicker. Probably not. Anyways, any information would be great. Thanks!

[Julie]

Well, check with BCBS if they'll fund an at home study (if not, can you pay?), and if they have suggestions about which one to get it from (maybe your MD will refer you there if you're lucky, but if not, we'll suggest which machine to get (it has to be one that works with the software - most do) depending on your finances. I've ordered from SWC and they're great to deal with.

[Nevergiveup13]

1102TC,
I am sorry you are going through what you are going through! I have been told when I wake up like I do that these are panic attacks too. Heard it many years so I quit thinking about it. All of this will give anyone anxiety. All I want is to be safe breathing at night and to wake up and able to have energy. I am hoping for that one day and will hope and pray that for you too!

[Nevergiveup13]

Julie,
I will check with my insurance company tomorrow am before my pulmonologist appointment. In the meantime, will look into paying for the study myself. What is SWC? I will also search for it on the homepage.

Thanks again for your help!

[Julie]

Secondwindcpap.com....

Tip - there are people here who routinely have machines for sale cheap (no script needed of course), so look for a Resmed Airsense 10 Auto (the 'for Her' model if poss, but not mandatory), but there are others that you can use to test with that are cheaper. And you can look at the first one on Cpap.com (forum sponsor) though they'll want a script on machine and mask.

Btw - do you know if you tend to mouth breathe while sleeping, i.e. open mouth vs not?

[Nevergiveup13]

Julie,
I will check that out on the forum. You are referring to test devices for sale or CPAP machines? I do not open my mouth at all. I usually am lock jaw because of my TMJ with my mouth guard. I did wake up one morning last week and had my mouth opening breathing out of it because I was more congested because of my allergies and constant drainage congestion. That morning I actually felt a bit more rested and more myself. Haven’t had that since.

[Nevergiveup13]

Julie,
Also I guess I was a bit confused-sorry. It is a CPAP to test with not an actual sleep study or buy a sleep study kit?

[Julie]

You can test with most up to date machines that work with the software (which again would be most). Resmed's are more popular and easier in some ways to navigate and use than e.g. Phillip's Respironics ones (they're the 'other' biggie).

[Pugsy]

A cpap machine can't really be used for diagnosing a sleep disordered breathing problem because the minimum pressure available in theory can adequately treat some people's airway issues. We do sometimes have situations where people have such obvious symptoms they just go ahead and buy a machine and do the DIY thing but in your situation it's not so clear cut so I would advise a real sleep study and the in home studies can be just as good as the in lab studies as long as the study done qualifies as a type II study.
It's like anything else...the more you get the more it costs.

Home sleep studies come in various shapes and sizes and amount of data collected.
Here's a brief explanation of the various kinds
http://freecpapadvice.com/home-sleep-tests

As for insurance paying for it....check with your insurance company and maybe even the sleep center near you if they even offer a home study but don't do the cheaper version which is essentially a pulse ox only thing.

[Nevergiveup13]

Pugsy,
Thanks for the information, I will definitely look into the suggestions.